Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

@gaetanche

I had a diagnosis in April 2011 of AL amiloidosis with one organ involved, my liver.

My main symptoms was : severe intrahepatic cholestatic jaundice, shortness of breath, my liver was 5 times the normal size. Just prior to my chemo treatments, my liver presented signs of failure. Liver biopsy and a great pathologist who suspected amyloidosis has led to my diagnostic of amyloidosis AL with severe hepatic dysfunction.

I had 8 months of Velcade + Dex followed by a SCT in February 2012.

I am in complete remission since that time and continue to be. I had my annual visit to my oncologist/haematologist in January 2016, the results of my tests are all in the normal range, including my liver.

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@tmousetis, Thank you for sharing. I am unfamiliar with treating AL. Your sharing of your experience has provided all of us with excellent health advice that would benefit many of us! Congratulations, and take a bow for your dedication, your positive attitude, and your determination to go the long journey. I hope that you are doing well, and continue to reap the benefits of being proactive about your care. Rosemary

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@jenrico

TMoustis:

Waiting to see what regimen of meds I will need to take. Waiting to see how
much heart involvement there is.
My dizziness is coming from a decrease in blood pressure when standing – in
a test yesterday, My bp was 134/62
while lying down and it dropped to 60/20 upon standing.

I’m not eligible for a stem cell transplant because of my age – 70+.

Jenrico

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@jenrico You are fortunate, indeed, to be near to Rochester. I just want to check in and ask how treatment is progressing. How are you feeling? Rosemary

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I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and two biopsies done. I have so many questions, I don't even know where to begin. I am in the Green Bay area and my doctor is sending me to her colleague in Milwaukee to get a second opinion to make sure I don't need any radiation in the area that I had my amyloidosis removed from. I had a skin lesion pop up out of the blue. It was only a spot on my skin and the entire thing was removed. All the tests came back negative but my urine shows way excessive amounts of protein and my doctor doesn't understand why. She said she's never seen Cutaneous Amyloidosis (which is what I was found to have initially) and so she wants me to go see this other doctor in Milwaukee. She also ordered a cardiac MRI and a biopsy of fat tissue just to be sure there are no amyloids hiding anywhere that they missed with any of the other imaging that was done.

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@luckyme54216

I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and two biopsies done. I have so many questions, I don't even know where to begin. I am in the Green Bay area and my doctor is sending me to her colleague in Milwaukee to get a second opinion to make sure I don't need any radiation in the area that I had my amyloidosis removed from. I had a skin lesion pop up out of the blue. It was only a spot on my skin and the entire thing was removed. All the tests came back negative but my urine shows way excessive amounts of protein and my doctor doesn't understand why. She said she's never seen Cutaneous Amyloidosis (which is what I was found to have initially) and so she wants me to go see this other doctor in Milwaukee. She also ordered a cardiac MRI and a biopsy of fat tissue just to be sure there are no amyloids hiding anywhere that they missed with any of the other imaging that was done.

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luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
What kind of symptoms are you experiencing? When is your appointment?

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Hi There, my name is Bob and My xwife was recently diagnosed with AL. Kind of in the same place you are now, looking for answers. One thing you need too know is you can’t believe everything you read about this disease. It effects each person differently. Sherry found out about her AL when she changed health plans. Thank God she did, because the first blood test reviled that her kidney function was only at 21%. We have been with our doctor for almost 14 years and found out she did nothing when her last blood test showed her kidney at 48%. She more then likely would not be doing dialysis at this stage had she been told. I would like too hook you two if you would like. Please let me know.

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@rosemarya

luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
What kind of symptoms are you experiencing? When is your appointment?

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The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

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Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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@kanaazpereira

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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@kanaazpereira Thank you for asking me to join in. I was diagnosed with a very rare kidney disease in March 2015. In 1988 I was diagnosed with systemic lupus and had been producing abnormal amounts of protein since then. My doctors had been chalking up the problems with protein levels as a result of the lupus. Finally in 2014 my nephrologist thought there was something different, and needed further investigation. As they did the testing and eliminated possible situations, everything was sent to both Cedar-Sinai Hospital in Los Angeles and Keck USC School of Medicine. The renal pathologist there was hoping that it was not amyloidosis. Instead my disease is called Type 3 Collagenofibrotic Glomerulopathy. There have been less than 50 cases in the world diagnosed and I am the only one in the United States that they are aware of at this time with this condition. Unfortunately I do not have any information I can give you on amyloidosis.
Ginger

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@kanaazpereira

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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Sorry for the delay, didn’t see your response until now. She is doing pretty darn good considering. She has had a kidney biopsy and a bone marrow biopsy and we have an appointment on the 7th to hear where she is at and to what degree the AL is has spread. We also have an appointment with the cardiologist this week to find out how much involvement in the heart. She is scared but wants the cards on the table so we can move forward with treatment. I want too say that this site has been invaluable for me and am thankful for what you all do.

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@colleenyoung

Hi @jenrico, Welcome to Connect.
We hosted a webinar last June called “Amyloidosis – What Patients Need to Know” https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.

I’d like to introduce you to @gaetanche @mvpdda and @tmousetis who also have AL amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What led to your being diagnosed?

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Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

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